Impact of Cognitive Load on Family Decision Makers' Recall and Understanding of Donation Requests for the Genotype-Tissue Expression (GTEx) Project.

Genomic research projects that collect tissues from deceased organ and tissue donors must obtain the authorization of family decision makers under difficult circumstances that may affect the authorization process. Using a quasi-experimental design, the Ethical, Legal, and Social Issues (ELSI) substudy of the Genotype-Tissue Expression (GTEx) project compared the recall and understanding of the donation authorization process of two groups: family members who had authorized donation of tissues to the GTEx project (the comparison group) and family members who had authorized organ and tissue donations in years previous, who subsequently participated in two different mock-authorization processes that mimicked the GTEx authorization process (the intervention groups). Participants in the comparison and intervention groups were matched on key demographic characteristics.

Confidentiality in Biobanking Research: A Comparison of Donor and Nondonor Families' Understanding of Risks.

Aims: Confidentiality of personal identifiers potentially linking the genetic results from biobanking participants back to the donor and donor relatives is a concern. The risks associated with a breach of confidentiality should be ascertained when biobanks collect samples requiring the consent of a family decision maker (FDM) from deceased organ and tissue donors. This article explores FDM knowledge and opinions regarding risks associated with participation in biobanking research in the context of the Genotype-Tissue Expression (GTEx) Project.

Communicating About Choices in Transplantation (COACH).

Introduction: Previous research highlights the difficulties patients with end-stage renal disease awaiting kidney transplant experience while attempting to manage both the logistical and the content-related aspects of discussions about transplantation. This article presents pilot results of the behavioral communication intervention program, Communicating about Choices in Transplantation (COACH), designed to improve transplant candidates' communication about transplantation.

Research Questions: As compared to matched controls, increases in knowledge of deceased and living donor transplantation, communication self-efficacy, intentions to hold conversations about transplantation, and self-reported discussion were expected for pilot participants from pre- and postassessment; decreases in conversational difficulties were also posited.

Utility and Usability of the Rapid Assessment of Hospital Procurement Barriers in Donation (RAPiD) as a Tool for OPO Hospital Development Staff.

Context: Few systematic assessment tools are available to organ procurement organizations (OPOs) for evaluating donation climates of hospitals in their donation service areas (DSAs). The Rapid Assessment of hospital Procurement barriers in Donation (RAPiD) was developed for OPO hospital development staff to assess the organ donation climate of hospitals.

Objective: To implement a national test of the RAPiD to examine its efficacy and usability by OPO hospital development staff.

Disparities in the completion of steps to kidney transplantation: protocol for a systematic review.

Introduction: Disparities in access to transplantation have been well documented. The extant literature, however, focuses largely on disparities and related barriers for African-American patients and none has used the steps to transplantation as a guiding framework. This review will catalogue disparities in the steps to transplantation as well as the barriers and facilitators to completion of each step identified in the extant literature.

Keep it going: maintaining health conversations using relational and instrumental approaches.

The initial moments of conversations, particularly discussions addressing difficult or unexpected health topics, establish the context and tone of the entire discussion. We examined how elements of relational and instrumental communication occurring within the first five minutes of the request impacted the length of the discussion. A sample of 16 U.

Communicating Effectively about Organ Donation: A Randomized Trial of a Behavioral Communication Intervention to Improve Discussions about Donation.

Background: Families' refusal to authorize solid organ donation contributes to the organ deficit in the United States. The importance of communication to reducing refusal to requests for solid organ donation at the bedside and thus increasing the supply of transplantable organs cannot be overstated. This research compares two versions of an innovative communication skills training program for Organ Procurement Organization (OPO) request staff, Communicating Effectively About Donation (CEaD), designed to improve the quantity and quality of organ donation discussions with family decision makers (FDM) of deceased patients.

A Comparison of the Request Process and Outcomes in Adult and Pediatric Organ Donation.

Background And Objectives: Although existing studies suggest that factors affecting families' decisions regarding pediatric organ donation mirror those for adult patients, health professionals working in this area maintain that pediatric and adult decision-makers differ in significant ways. This study compared the request process, experiences, and authorization decisions between family decision-makers (FDMs) of adult and pediatric donors and nondonors.

Methods: Perceptions of the donation request were collected via telephone interviews with 1601 FDMs approached by staff from 9 US organ procurement organizations (OPOs).

Family decision maker perspectives on the return of genetic results in biobanking research.

Purpose: There are many ethical considerations regarding the return of genetic results to biobanking participants, especially when biobanks collect samples from deceased organ and tissue donors that require the authorization of a family decision maker (FDM). This article explores FDM knowledge and opinions regarding return of genetic results in the context of the Genotype-Tissue Expression (GTEx) Project, which does not return results to participants.

Methods: Data collection included a survey completed by Organ Procurement Organization requesters (n = 22) and semistructured telephone interviews with FDM (n = 55).

Communication self-efficacy, perceived conversational difficulty, and renal patients' discussions about transplantation.

Objective: Many patients with chronic and end-stage renal disease (ESRD) have reported difficulties initiating and managing discussions about kidney transplantation, particularly live donor transplantation (LDT). Limited communication has demonstrable impact on patients' access to transplantation, the duration of dialysis treatments, and the length of time awaiting a transplantable kidney. This formative study sought to identify the specific communicative and conversational elements impeding ESRD patients' discussions about transplantation to inform the design of an educational program facilitating transplant-related discussions.

Consent to organ donation: a review.

Successful transplant medicine hinges on consent to deceased organ donation. Yet rates of consent remain suboptimal. To increase the availability of transplantable organs, several policy strategies along with a rich body of evidence aimed at identifying best practices for obtaining consent have accumulated.

Attitudes and acceptance of First Person Authorization: a national comparison of donor and nondonor families.

Background: First Person Authorization (i.e., donor designation) legislation makes indicating one's intent to be a posthumous organ donor legally binding, much like a living will or advance directive.

Consenting to donation: an examination of current practices in informed consent for tissue donation in the US.

Informed consent is the primary moral principle guiding the donation of human tissue for transplant purposes. When patients' donation wishes are not known, family members making the decision about tissue donation should be provided with requisite information needed to make informed donation decisions. Using a unique dataset of 1,016 audiotaped requests for tissue obtained from 15 US tissue banking organizations, we examined whether the information provided to families considering tissue donation met current standards for informed consent.

An exploratory study of relational, persuasive, and nonverbal communication in requests for tissue donation.

This study explores the effects of tissue requesters' relational, persuasive, and nonverbal communication on families' final donation decisions. One thousand sixteen (N = 1,016) requests for tissue donation were audiotaped and analyzed using the Siminoff Communication Content and Affect Program, a computer application specifically designed to code and assist with the quantitative analysis of communication data. This study supports the important role of communication strategies in health-related decision making.

Determinants of family consent to tissue donation.

Background: Family consent to tissue donation currently falls well below that for solid organ donation. Moreover, research suggests that Americans have limited understanding of tissue donation, an activity largely overshadowed by the more publicly visible organ donation. This research sought to identify determinants of families' consent to tissue donation.

Improving donation outcomes: hospital development and the Rapid Assessment of Hospital Procurement Barriers in Donation.

Context: Deficiencies in the donation process continue to contribute to the shortage of organs available for transplant. Continuous quality improvement of hospitals' donation processes is needed to identify and correct the problems.

Objective: To test the Rapid Assessment of Hospital Procurement Barriers in Donation (RAPiD), a direct observation technique with a focused ethnographic strategy, for assessing hospitals' donation processes and identifying areas in need of continuous quality improvement interventions.